How to Support Someone with Chronic Illness: A Guide for Friends and Family:
Don’t ask open-ended questions when offering help.
Asking, “Is there anything I can do to help?” is a kind gesture, but it’s often too broad to be effective. Most people, especially those going through tough times, may feel embarrassed or unsure about asking for specific help. Instead, offer something concrete, like house cleaning or bringing over dinner on a specific night. Not only does this help in a practical way, but it also takes away the pressure of having to think of a specific request. Offering help in a clear and actionable way shows you genuinely care and makes it easier for them to accept.
Let them vent.
You don’t always need to have answers or advice—sometimes, we just need someone to listen. We’re often used to the small talk and autopilot responses, like, “I’m fine, and you?” But, if we’re opening up about our struggles, we’re probably not seeking solutions unless we specifically ask for them. Many of us with chronic illnesses have spent years researching, advocating for our own health, and trying to understand our conditions. When we vent, we just need you to listen—sometimes, that’s all we want.
We are not lazy.
Saying, “It must be nice to be in bed all day” will likely earn you the “Asshole of the Year” award. Trust me, no one with chronic illness would choose to be in bed if they had the choice. We’d rather be out enjoying life, spending time with friends, or working on something we’re passionate about. But, instead, we’re often prisoners to our own bodies. Spending the day in bed is not a luxury for us—it’s a sign that we’ve had a rough day.
“You don’t look sick” or “You’re too young and healthy to be sick.”
These comments may seem harmless, but they can be incredibly hurtful. Invisible illnesses are not always obvious, and because of this, we are often dismissed by others, including medical professionals. Hearing these phrases feels like a betrayal, a reminder that no one truly understands what we’re going through. We may share pictures of our good days or fun outings, but what you don’t see are the 24/7 pain, depression, grief, multiple doctor visits, and countless other struggles. What you see is the mask, the warrior paint, and the version of ourselves we present to the world. We just hide it well.
Gift suggestions for those in the hospital or recovering from surgery:
If we’re in the hospital or recovering from a procedure, thoughtful gifts can make a world of difference. Some of my go-to suggestions include:
- Face wipes
- Lip balm
- Books or magazines
- A fuzzy blanket
- Essential oils
- Snacks
- Headphones
Patience.
We often feel guilt about having a chronic illness, and that guilt can extend to those around us. Your patience and understanding mean the world to us, even if we sometimes have a hard time expressing that. If our struggles affect you, like when we seem short-tempered or distant, please be understanding. Sometimes we don’t realize our suffering is showing. Instead of getting frustrated, just reassure us that it’s okay and that help is available. We appreciate your support more than you know.
The Spoon Theory.
Many of us with chronic illnesses refer to ourselves as “spoonies” and live by something called “The Spoon Theory.” Simply put, we have a limited amount of energy each day, represented by spoons. Everyday tasks like taking a shower might cost 2 spoons, cleaning the bathroom could take 5, and running errands or going to a doctor’s appointment can use up another 5. When we’ve run out of spoons, we’re done for the day—exhausted. Sometimes we even borrow spoons from the next day, which means we end up bed-bound. So, if we cancel plans last minute, please don’t take it personally. We’re probably bummed about it, too, but we’ve run out of spoons. We still love being invited, though!
Thank you for caring enough to read this.